Tuesday, February 15, 2011

An awareness story - Evelyn

"It all began a couple years ago when Evelyn fell down the steps in our home. She landed on her arm and then stopped using it. We assumed she had hurt it from the fall and took her to the ER. There they assured us that it was a small fracture, put a splint on her, and sent us home with a referral to an Orthopedist. In the meantime I noticed that Evy had a slight limp in her right leg.. the same side as her hurt arm. I remember laughing with a friend and saying that my poor baby was falling apart.

We went to the Orthopedist a few days later and he said it was not a fracture. He could not explain why she wasn't using her fingers at all, and didn't question it. Looking back there were signs that this was neurological and not simply a physical injury from a fall. I even asked him about her ankle and he said that toddlers can't sprain their ankles... and still he didn't question what was wrong. Instead, he sent us home and said that if she did not use her arm in three weeks to come back.

A few days passed.. we had a Halloween party and the normally socialite-esque Evelyn wanted a nap right after her friends arrived. She went right down and slept through much of the Halloween fun. Warning bells rang in our minds. This was not our Evy! She was still not using her arm. No wiggling of fingers. Just a dangling limb. Scary stuff. So we went to the pediatrician. We mentioned the leg, showed her the arm, and she seemed perplexed. She ordered another x-ray and suggested we see a neurologist. I tried to make an appt. with the neurologist the next day and between two offices I was only able to make an appointment for February and then December. Increasingly frustrated, we decided to do more the following day since it was five o'clock.

That night, Brian took off Evy's clothes and diaper in preparation for pajama time and he called me in... Evy's leg was a backwards C- her knee was about 3 inches behind where it should have been. Clearly she had lost most use of it. Saying that I flipped out is an understatement, because this confirmed all of my previous intuition... that she had no fracture but that something else was wrong. Unfortunately we had to go to sleep that night with this big question mark looming while our sweet angel slept.

The next day we called the pediatrician and they soon told us to head to an ER for a full neurological exam. When we got there they sent me home with Stella to keep her from H1N1, which was rampant. I left just as she had been taken for her CT scan. I drove over an hour home with Stella and killed some time doing some work in the yard to quell my nerves. The phone rang and Brian broke the news- Evy had a brain tumor. I threw clothes into a suitcase and left with sweet Stella immediately, my heart breaking into a million pieces all the while.

Evy's brain tumor was on the left side, therefore affecting the right side of her body. It was at the top of her skull and the neurosurgeon has referred to it as "gigantic". (The size of a mango in diameter.) Parts of it were dangerously close to arteries. They suspected it had been growing since birth, but we now know that it only took 2-3 mos to grow. Surgery was scheduled for Friday morning and there was still hope that it was a benign tumor. The next day she had an MRI, which saddened the doctors because it showed that it was a much nastier tumor than first expected and was most surely malignant. On Thursday Evy's condition worsened. I was certain we were going to lose her soon. The oncologist told our neurosurgeon that emergency surgery must be performed. As with every other procedure, I held her in my arms in her crib as they wheeled us down to the OR. Through all of this I have kept my mood as light and positive as possible for Evy's sake as well as for my own. 

I laid her on the operating table and talked to her as they put her under. She only cried for about 10 seconds and then was out. They kept her sedated through the next morning when she underwent a post-op MRI of brain and spine. The news which resulted from this MRI was that he had gotten every single part of the tumor out, even those around arteries. She had suffered from a stroke at one point, either before or after surgery (I suspect it's what caused the fall.) Her spinal cord looked clear of tumors, but was not 100% because of the amount of blood in the cord from surgery that obscured the image.

After all was said and done, they found the diagnosis to be:

A rare type of brain tumor called an AT/RT. The survival rate is very low, but you know what? If anyone can beat this it is my dear gal. She has the power of a family who adores her and will do anything for her. She has a constant stream of cancer-fighting breastmilk at the ready... we will not give up hope that our little twin girls will grow up together happily... even if it means she endures a beyond difficult fight."

It has been almost a year and a half and little Evy is still fighting strong. She's been through 53 weeks of chemotherapy and is currently cancer free. There have been other complications from the chemo, but her family hopes and prays every day that their little Evy will keep fighting.  

Follow sweet Evelyn's story here

1 comment:

  1. Thank you for posting this! Cancer is on the rise in children and most pediatricians are not trained to keep this in their minds during an assessment. It is ultimately up to parents to be aggressive if our gut is telling us that something is wrong with our child. After being told that is was "just a bad virus" that needed to "run it's course" I waited several weeks before taking her to the ER. By then the cancer was 98% of her marrow. Awareness is the key! Evy is a very fortunate and loved little girl. Keep kicking cancer's butt, Evy!